Newly Diagnosed (Hoping for input and advice)

General General TN & GPN (Old Site)
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Hello All,

I'm Tony and am 23 years old. I'm a recent college graduate. As I was getting ready to graduate about a month before my graduation ceremony, my friends and I went to a mexican restaurant. I had hard tacos and thought I had a shell stuck on left side of throat. Feeling was still there for a week so I went to an ent and he prescribed prednisone. That didn't help. Then antibiotics and that didn't help. 2-3 weeks later My pain shifted to the right side of my throat. The left side was just a sore throat like feeling but then I experienced sharp dull pain on right side of throat and also have left eye pain thats constant. Don't know if it was a side effect from antibiotic or prednisone. Also developed palatal tremor at same time. This all happened so suddenly over the summer. . It took until September to get diagnosed with PM. I had an mri and they found a small white lesion, but the doctor wasn't concerned. Until yesterday I went to a physiatrist to get a consultation on botox. He looked over the same MRI and said he was concerned and said I might have MS and that I have either trigeminal neuralgia or GPN. I came home in tears and didn't know what to expect. He said he wanted me to see a neurologist right away. Fortunately the neurologist he recommended seen me this morning, did reflex test and looked over my mri and wasn't alarmed by the lesion, but said he thinks I may have neuralgia. I'm getting blood work tomorrow to get tested for autoimmune deficiencies and see if anything comes up. Also must wait 2 months for insurance purposes to see if new lesions appear and also to do an mra. Been prescribed tegretol.

I have a few questions for everyone that is willing to respond to my discussion post. 1. How were you diagnosed, by explaining your symptoms or by mri/mra? 2. I notice a lot of people have had mvd/gamma knife surgery, but did you still do the surgery even though your test results have come out normal? 3. Did any of you had tremors associated with your gpn?. (example my palate spasms) 4. Is there anyone who has MS and GPN as well and how did you go about it with lesions in brain, medicine or surgical route? 5. If anyone is from Michigan area, do they recommend any neuro doctors who specialize in this and have had positive outcomes on quality of life after seeing or being performed by this doctor?

I apologize for all this information. It's a lot to digest. Look forward on your input and feedback as well as interacting with you all regarding this terrible condition.

Tony

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I had this pain in my tongue for like 4 months back in 1998 when I was 16 years old I went to so any doctors and specialist and never got any info or get diagnose , my mother happen to take me to an acutupunturist and had 4 treatments and pain was gone till January 2 2014 pain came back ,I was lucky to have found this website and research my condition I made an appt with neurologist and was diagnose with (GPN) and all I have to say is that I avoid taking medications I Belive they hurt you more than helping you , I didn’t take any medication my neurologist prescribed , instead I went to the acupunturist I have had 2 acupuncture treatments and I must say I saw a big difference after the first time pain was almost gone , just had my second treatment on Monday and I have had no more pain I can now talk , eat ,sallow ,brush my teeth and sleep with no more electric shock like pain in my left side of my tongue . I’m going for last treatment next week because I bought a 3 treatments package $150 well worth the money , to me no side effects like medication and I’m pain free . I hope this helps others and acupunture can be an option for you too it has done wonders for me …
T

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Hello Tony,

Sorry to hear you are having symptoms of neuralgia.

My problem came up as pain, sporadic, short sharp, stabbing in the left tonsil area. I thought it might be a piece of a taco shell too. My pain was only ever on the left side, never on the right, never shifting from side to side, and never in the eye.

It slowly progressed till one day in December of that year (2006) I had this horrible spasm of pain while eating, in the left tonsil extending up the jaw to the ear canal and ear drum, lasting for 5 minutes. I almost passed out and I couldn't talk. It happened again that day and increased for the next 6 weeks then magically went away. It recurred periodically over time till the last period of 6 months in 2012 where I could no longer live with the pain, I had successful MVD surgery, and my full story is in my various posts.

I saw my primary care doctor, ENTs, Gastroenterologists, pain specialists, and a neurosurgeon. Only the neurosurgeon recommended MVD surgery. It doesn't always work. My neurosurgeon's office told me they don't usually see lesions or vessel abnormalities on MRI. It is a diagnosis based on the specific symptoms people have for the most part.

The diagnosis was basically by symptoms only, first diagnosed by a ENT at Duke University in early 2007. No lesions were seen on CT or MRI or endoscopy by anyone but my neurosurgeon, who in 2012 looked at my 2007 MRI (with contrast) and saw the offending arterial loop of the PICA in the region of the left, 9th cranial nerve (glosso-pharyngeal nerve).

As far as medications are concerned, they helped me to some extent, but never for very long and the pain became unbearable regardless. I was so desperate that I have to say meds was worth a try and they did help me temporarily even with the side effects (tremors and twitching are some of the side effects of Tegretol).

For my part, I wish I saw a neurosurgeon back in 2006 and I would have been spared 6 years of misery. I have my life back.

Good luck and definitely get the opinion of a good, experienced neurosurgeon as part of your search for answers and options. With two sided symptoms I don't know that MVD will help: that is a question best answered by a neurosurgeon.

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Hi Tony, I have MS, Sjogrens and GPN. Also suffer from TN. Please do not be too scared as MS is not the end of the world. I am 52 now and first had signs at around 15 and I am still walking etc. It is not a death sentence and it is the way you approach it that makes all the difference.

Ok, the first thing to do is arm yourself with knowledge. The more knowledge you have, the better you can understand what is going on and how to best manage this. I am under a top MS neurologist in Australia, and have had an opinion from a leader MS researcher and specialist and both agree that the way I manage mine is better than any medication, so I can offer you very useful advice for you to start on.

Let me explain about the one lesion part. MS is diagnosed by what is called the McDonald criteria (I have attached the criteria for you), so basically one lesion is not enough at this stage for a definitive diagnosis and your doctor is correct that you need to be assessed and now under a neurologist to be monitored. This neurologist you saw will probably want to see you every 3- 6 months after initial tests or if other symptoms occur. They will run heaps of blood tests to rule out other autoimmune diseases as other things can mimic MS. They will also run a battery of tests for balance, hearing, auditory brain stem tests - nothing to be scared of. You will also have more MRIs over the coming year.

Now here are some blood tests you need to ask your doctor to run. Vitamin D, B12, CBC and ESR. Low vitamin D levels are associated with MS and also relapses. There is a book I would like to send you to read so I will add you as a friend, that way you can also ask me questions and I will try to answer them for you as I know how scary this can be as I spent years in my younger days not knowing what was wrong...

Get your vitamin D and B12 checked now - low levels of B12 can cause nerve issues and often can be low in MS. After you get your levels checked (ask you doctor for a copy of blood tests) if you are under 150nmols you need to begin taking vitamin D supplements, this is extremely important. I have heaps of research on this area with MS. If you do not have any blood or platelet issues, or are on blood thinning drugs you need to consider taking high dose Flaxseed oil, approx. 4 grams per day. Also high strength fish oil. With the fish oil you need to look at the EPA part of the content and need to take no less than 1 gram of EPA. Don't worry too much the DHA side, it is the EPA that is important here. These two oils help reduce inflammation, and inflammation is what causes damage in the central nervous system (CNS) - the brain, spinal cord and optic nerve - in MS. So the goal is to reduce inflammation.

Diet is also important, cut back on red meat, eat more vegetables, get plenty of rest but also exercise. Other supplements I have taken for a very long time are: CoQ10 150mg daily, Natural Vitamin E 500iu and Grapeseed extract 2,400mg. These and the oils are my daily regime and I can tell you that for 6 years when I started having very bad attacks affecting my legs etc., that my MRIs showed constant brain inflammation throughout. I started this regime plus acupuncture for the neuralgia side and my brain has not shown any inflammation since. I have a very good brain for someone with MS for as long as I have had it. So looking after yourself is important and the sooner you start on vitamin D and the oils the better. The other supplements are excellent too. One word of advice, keep the oils in the fridge!! Very important. Also ensure the containers they are in cannot be seen through. Example is the fish oil is liquid form that it is in a dark coloured bottle. Also look at expiry date and choose the one with the longest expiry - there are reasons for this but I won't burden you with those just yet.

Surgery will NOT help you if you have MS. So don't even begin to worry about surgery. First steps are to work on getting a diagnosis, trying to manage your symptoms etc. Now your WORST enemy for MS is stress. The more you stress, the worse the symptoms will become. This is a known fact with MS. Neuralgia, tremors, pain in your eyes are all things that can and do happen in MS.

Another thing you should do it get a diary and write down your daily symptoms as it can be really easy to forget these. Then once a month you can look at writing up a summary. Example: neuralgia in the eye 3 days running and rate the pain out of 10, 10 being the worst. Tremors in my right hand on and off during the month - 6 days in total etc. This will really help your neurologist a lot. Also note down activities and weather on the days your symptoms are worse. Another is when the neuralgia strikes take note of what the humidity factor is, as generally the drier the air the more the trigger can be. If you smoke, give up!!! As this only aggrevates the neuralgia PLUS there is a lot od scientific research now that shows a direct correlation between MS and smoking, and that smoking causes progression. Certain foods and drinks can also make the neuralgia worse, so ensure you note what you drink on those days as this will help you find out trigges so you can avoid them.

Another thing is go and have acupuncture. Since you go to uni, seek out a university or college that teaches traditional chinese medicine and go to their university clinic. I can send you a list of the main points to settle this down. A few people now on this forum have used these points and found relief.

Please take some very deep breaths. This is not a death sentence. One can manage these things. If you stress it will make the neuralgia a lot worse. Try listening to some meditation music at night when you go to bed as you need to learn to switch off from thinking about it. I know it is easier said than done, but it is possible.

I have attached a few files. One is a booklet called Understanding MS. You will note a number of quotes through this book by Karen. That is me. The other quotes are from people I have gotten to know over the years. I am very active within the area of educating people on MS and lobbying for services for MS. I have worked very closely with our MS Australia for policies etc. I am very well versed in MS and also GPN and TN. I have a presentation I used for pathophysiology for MS which I am happy to share with you as it is very informative. I also am currently doing a masters degree in health science/master in TCM - acupuncture has helped me so much that I do it on myself now and like to help others in pain. So if you have any questions at all, please do not hesitate to ask me and I will help you as much as I can. I may not answer immediately as I do not check this forum every day. But will answer you.

Just know that you are not alone in this journey :-)

28-McDonaldcriteria2010.pdf (113 KB) 29-MSandPain.pdf (524 KB) 30-UnderstandingMSAug2012.pdf (538 KB)
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Hi Tony, first of all I am sorry you are going through all of this. Like Kaz, I have MS, TN, and GN bilaterally for 20 years..............and I do fine. Kaz gave some great information, thanks Kaz!

I would suggest you collect all the data you can, get information and diagnosis by the best people you can, and then handle it in the way you handle everything. A positive outlook works best.

And prayers! I pray a good amount and talk with St. Blaze ( the Saint of throats)............cause no one else can imagine all of this. Another thought, the pain, and the MS symptoms pass. They come back but they pass and this has always given me hope.

I bike and bought a new bike, went back the next day to pick it up and my husband said " get on it!" and I could not, too unsteady and my husband said "it will pass", and it does and it did, and I ride that bike on trails.

Indeed you are not alone. There is good life quality.

:)

6

Wow Tony! So sorry to hear how this stole from your college graduation. You are much too young to be battling this condition. You are not alone and I am glad that you found this support group so early in your onset. I know the pain is unbearable. I was diagnosed about 9 years ago. My condition lasted for short periods of time in the beginning episodes, just a few weeks. Then it would subside only to return months later. Each time, I hoped it would be the last. I wouldn't suggest rushing into treatments. I don't think you'll find a surgeon who would do the procedure so early, anyway. It could go away and never come back. So, pray for that. I know someone who had Trigeminal Neuralgia, only one episode! Find a neurologist or pain management that specializes in TN or GPN. TN is more common and the treatments are similar. They can manage your symptoms with meds. An oldie, but goodie that worked well for me for 2 years was Trlipetal, or oxcarbazepine. I was 5 years diagnosed and through several different prescriptions with various side effect and lingering symptoms before a NYC neurosurgeon prescribed Trileptal which worked like a charm, for me. Keep a journal of the rxs you try and the side effects Weigh the pros and cons. Be patient as they take time to be effective.

They did watch me for MS. I was scared, and thankful that it wasn't. Don't own the doctor's diagnosis. You will beat this!! We are here for you, cheering you on, claiming your victory!

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With pharmacuetical drugs such as antiepileptics and antidepressants in lower doses, they tend to only work for a period of time and then the body gets used to them, so doses are increased and then for some it just ceases to stop working. This is a medical known fact for anyone who has studied pharmacology when it comes to treating nerve (neuropathic pain). So I would not be rushing into the drug side either just yet unless it was prednisone to see if it settles down the inflammation.

However, if you take prednisone you need to ensure you take calcium supplements to counteract the long term issues with taking steroids. When prednisone is given in large doses short term, which for MS flare ups it is, this has a long lasting effect on the bones over time as it leaches them of calcium.

This actually goes for anyone on any oral type of steroid, even asthma steroid puffers, ensure you have adequate calcium in your diet as using a steroid daily, even though it is low dose, you are accumulating the effects in your body. It doesn't show up now, but later in life as the bones are slowly being leached. Also taking magnesium supplements is good.

So anyone on steroids needs to have their vitamin D levels checked along with blood calcium levels, then look at what supplements you can take to counteract long term effect. In regards to vitamin D levels, if your levels are low, or in low range, you need to get them to the highest level as this helps bone health and also prevent a number of other diseases. How you can work out how much to take is that every 1,000 iu daily equates approximately to 25nmols in the blood. So if you levels were 40 nmols and you want them to be 100 nmols. So you would take 2 vitamin D a day and then have your levels checked again in a month to 6 weeks time and see where you are at and then can decide if to had another 1,000 nmol.

Also in taking vitamin D ensure it has an oil component for the capsule side as vitamin D needs oil to metabolise. So ideally you need to take it with a form of oil. Taking it for flaxseed or fish oil is good, or with milk. But better with oils. Magnesium and calcium are best taken at night time before bed as the bones go through their mineralisation process when we sleep. So to get the most out of supplements that we need you need to be mindful of how and when you take them. Just like prescription drugs as some need food to metabolise, other empty stomach etc. Certain supplements are the same. ;-)

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***Sorry these sentences read:

So if you levels were 40 nmols and you want them to be 100 nmols. So you would take 2 vitamin D a day and then have your levels checked again in a month to 6 weeks time and see where you are at and then can decide if to had another 1,000 nmol.


and should have read as:

So if your Vitamin D levels were 40 nmols and you want them to be 100 nmols. So you would take 2 x 1,000 iu vitamin D daily and then have your levels checked again in 4-6 weeks time and see what the levels are, and then decide if to add an extra 1,000+ iu daily.